The newest research about living with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (ME/CFS)/fibromyalgia, with personal observations
(the most pertinent parts of long articles will be highlighted for the reader)

About The Author

On March 4, 1988, I was diagnosed with Post-Viral Syndrome, which CDC soon decreed had to be referred to by the silly name "Chronic Fatigue Syndrome". My symptoms definitely traced back to a severe flu-like illness with a 105 fever for several days in mid-February 1987.
Despite relapses and increasing symptoms, I continued to work full-time as a legal secretary/paralegal -- even when I had no Quality of Life because I had to spend every non-working hour in bed so I could work the next day -- until February 2000, when months of severe sleep disturbance and ever-increasing symptoms (due to sleeping 2 hours or less a night due to the pain) cost me my job.
The doctors and judge didn't want to hear about failed attempts to return to work; they just assumed I don't want to work. "Don't confuse me with facts, my mind is already made up."
Since ADA will not force an employer to provide the accommodations I need, I started my own business so I could lie down whenever I needed to. I do proofreading and editing from home.
Visit www.CFSfacts.org or CFS Facts at YahooGroups or on Facebook if you want to learn the truth behind the myths.

• Simon Wessely and company often use a different set of criteria to select the patients for their "CFS" studies (such as the Oxford Criteria). These selection criteria are set up so as to include lots of people that are just depressed, and do not have CFS at all. As a consequence, it is not surprising many studies, based on the Oxford Criteria or similar, find that patients do not have XMRV, or can be cured by antidepressants: they studied the wrong people. In other words, when Simon Wessely says "CFS", he actually is talking about "depression". … The original XMRV research at the Whittemore Peterson Institute used the Canadian Consensus definition of CFS/ME. The advantage of these inclusion criteria is that they actually do select CFS patients. - H

• …The UK team's results speak for themselves. No DNA found during PCR testing, yet people are doubting their testing methods! If it was there, they would have found it. People with CFS/ME are delusional in their belief that it's a viral problem. Only those whose illness is clearly brought on by viral infection can consider this to be the cause. It's a bit like the Emperor's New Clothes this whole XMRV thing. Why are people with ME/CFS so defensive about accepting that the illness is neurological? People seem so frightened by the thought that they may have a biochemical imbalance in their CNS or their brain. It's a disease of the CNS or the brain, accept it, and stop pushing the viral envelope so we can get some real research done…. - R

• Why are people SO vehemently opposed to evidence that CFS is more than psychological? Who ARE these people and why do they feel so strongly? Why do they even care if they're not sick? Just wondering why people like us who have an illness are being subjected to out-right attempts at oppression. Why favor the UK findings, a poorly-designed study that as I understand it was shipped off for publication quickly without review, to a study that was confirmed by such influential organizations as the National Cancer Institute and the Cleveland Clinic? What exactly is going on here? - G

• Lest you think I am just another defensive patient, I have done plenty of PCRs and know how it works. .. Based on my own knowledge I am not at all convinced by the UK study. - S

• If you look at the sensory, adrenergic and immune mRNA responses to intense exercise as in the study by Alan Light, this strongly suggests something interfering at the genetic level. In a large multidimensional study organised by the CDC and published in the Journal Of Pharmacogenetics "suggest strongly that many causes of CFS have links to a handful of brain and immune system - related genes that either harbor small mutations or are working abnormally for some reason" This is classic retroviral interference rather than a group of people wired to handle stress abnormally. I am quite certain that a virus/s is the root cause of many cases of what is diagnosed as CFS and the WPI study is a THOROUGH and welcome start in this field. Hopefully to be replicated, positively or negatively but with the appropriate methodology. This illness is far too serious for the world to be treated lightly or politically as many of us believe the British study was. - I

• I have no doubts that this is a virus, producing these symptoms. My great uncle, who looked a lot like me, had this condition starting in his mid thirties and was misunderstood from that point on, until I was diagnosed. Imagine, no one thinking you're really sick, until you are a very old man… just being called lazy. His grandaughter, got it, as well… This very real physical disease without a cure has psychological barriers to every aspect of life… No matter what the cause of our illness, I hope we can all carve out a life for ourselves while we are waiting. I am very grateful for Dr Mikovits work. I think they are on the right track. It gives me hope; but life goes on. - C

• The second article seems more worrisome and distressing to me because of Dr. Kerr's involvement. WPI needs to find out what's happening and partake in testing the blood in tandem with these studies to ascertain if it's methodological/procedural - before we lose steam and hope. - E